12 years – yeesh! Diagnosed when I was 12 years old.
What advice would you give to someone who has just been diagnosed with RA?
Don’t get discouraged. It is possible to live a normal, happy life with RA. Take extra time to understand your body, your mind, and your strengths and weaknesses. In order to keep afloat you have to be very in tune with your needs. Also you must learn to be your own advocate. When it comes to treatment, doctors, and just dealing with people on a day-to-day basis, you need to know how to stick up for yourself and be honest with yourself about your needs.
And do your best to keep positive. There are a lot of things that have the ability to bring you down – pain, low energy, difficult people – as long as you can keep a positive outlook on your life you can overcome those things. I know it sounds easier said than done, but it’s important to keep your head held high. Learn to laugh and you’ll be fine.
Do you use any mobility aids?
Luckily, on a daily basis, no. Though on my worst days, when there is extreme swelling, I wish things were easier. The only thing I change on a regular basis is my prescription bottles from the child protective caps. Ha!
How has living with RA helped to improve your life?
I have become much more self-aware than I think I would would be had I not been diagnosed with RA. At times I’m sad that I lost a big part of my adolescence from being diagnosed because I had to grow up quickly. I had to learn to take care of myself at a very young age and I always felt different from my peers. But in a way I wouldn’t change a thing because it has made me into the person I am today. I’m honest with myself, I’m tougher, able to communicate better with others, and I’ve connected with a number of people that I never would have met if I wasn’t involved in the arthritis community. Life can be difficult but I’ve learned to see the positive more often than not.
Do you have any visible signs of RA?
Not that I know of! I do my best to keep my RA to myself, though my husband always seems to know when it’s a good day or a bad day. Only when I have swollen joints is it apparent.
Can you please describe some of your favorite coping strategies for living with RA?
I’ve always been the type of person to crack jokes when things are tough. I like to find something to laugh about to keep from getting too down. In the last few years, though, I’ve been getting better at talking about how I feel, especially with my husband, and I’ve realized that saying things out loud helps me cope better than anything. Even if it’s just a “ack, I feel like crap today,” it’s better than keeping it to myself. About eight months ago I started a blog talking about my life and arthritis and it has been a huge help. Before that I was very private about my arthritis, but it has pushed me to open up and discuss it – a very good achievement.
Can you please describe your current medical (traditional and alternative) treatments?
Currently I am taking Methotrexate and Enbrel to stabilize, but I have been on many other arthritis medications in the past. Most recently I was on Remicade (for about five years), but I decided I needed a break from such a harsh medicine, so with my doctor’s support, I took six months off from meds. It was a great experience but unfortunately I learned I need a little help, so I started up with Enbrel for the second time since my diagnosis. I also have an emergency bottle of Prednisone in my medicine cabinet for any surprise flares.
I’m a definite believer that diet and exercise can make a huge difference on life with arthritis. I did an elimination diet to find out if I had any reactions to specific foods and learned that dairy products and many grains cause significant pain in my joints. I switched to a “paleo” diet and also got connected with a personal trainer, recommended by my doc, who specializes in helping people with physical issues of all sorts. Now I try my best to have a good balance of diet and exercise along with my prescriptions to treat my RA. So far it’s going well!
Is there anything else about yourself that you would like to share?
Recently my husband’s job moved us from the Pacific Northwest to Oahu, Hawaii. It’s been a crazy transition, and I’m still trying to figure out how the change affects my arthritis. So far the stress of moving has made the biggest impact, but constant barometric pressure should be a positive! The process of moving and finding a new rheumatologist are added to the things I currently write about in my blog: lydaclark.blogspot.com.
Other than that I write mostly about my life being young and married, parenting two kitties, and attempting to figure out what to do with my life! I love meeting new people through the blog, especially others with arthritis, and I post something new every day. I started the blog with other young adults and kids with RA in mind, knowing that the most positive support is simply to see someone else out there who has RA living a normal, happy life. I hope it helps!